My name is Laura, and I was diagnosed with stage IV colon cancer in August 2003. At the time, I was 43 years old and in the second year of my pediatric residency. I had symptoms and was being seen by a GI doctor for two years prior to my diagnosis. I had multiple upper endoscopies but never a colonoscopy. My symptoms were attributed to irritable bowel syndrome, heavy periods, being 42 and working 100-120 hours per week, but not cancer. Cancer did not even cross my mind.
My partner Bonnie, and I went away for a weekend and the entire time I was in excruciating pain and afraid I was going to hemorrhage when I went to the bathroom. On the way home I told her I needed to go to the hospital and we went to a hospital where they did not know me. I took a stool sample with me at her urging because she did not want another doctor to say that I was not bleeding. I was admitted to the hospital in 30 minutes and saw a GI doctor that night.
When I was told that I had right sided colon cancer with a blockage and perforation and 9 out of 22 positive lymph nodes, I thought about what I had learned in medical school. By the time you have physical symptoms with right sided colon cancer it is too late. That was what I believed at the time.
I was in the hospital for two weeks, and a staging PET scan was never done, but I had a spot in my liver that was questionable. I started on 5FU and leukovorin and oxaliplatin. I had 14 rounds of that combination. I had multiple PET scans that showed activity in my ovary but all the other tests, ultrasound etc, said it was normal. I saw a GYN oncologist in January 2004 and had laproscopic surgery with ovarian biopsies, which came back normal. In May my CEA was normal and I was told I could return to my residency. I had a big party to celebrate and thank all my friends and family who had been so supportive. I was back at my residency for 3 days when I discovered that my CEA had gone up. I went for a PET scan that showed I had a mass that was positive and growing in my chest, not in my lungs. I saw a surgeon who cracked my chest open in October 2004 and removed the mass. Thank God it was normal tissue that grew as a result of chemo.
My CEA continued to climb and I decided, with significant prodding from Bonnie, to go to Johns Hopkins for a second opinion. I had a PET/CT done at Hopkins that showed a tumor in my liver on the main vein that drains the lower half of the body. It was in a very precarious place. I saw the surgeon, Dr. Choti, at Hopkins and he suggested chemo then surgery. I went on 5FU and CPT 11 (camptosar). I had 6 cycles and surgery in June 2005. Dr. Choti decided to remove my "pesky" ovaries while he was inside. My right ovary came back positive for colon cancer. The tumor in my liver was not detected because the chemo had shrunk it.
About that time, I found the Colon Cancer Alliance, thank God. I thought I had all the support that I needed. I learned from the folks at CCA that I am a survivor after diagnosis and I do not have to be disease free, just alive. I believed that my full life had been reduced to cancer. The people from the CCA helped change that for me.
I found hope when I had none through meeting people my age and younger who were living with advanced disease. I was told that there was greater than a 90% chance that the cancer would come back, but I started seeing it as a chronic disease. Most importantly, I was not alone. In November of 2005 my CEA went up again. I had to wait two months before I could get a PET/CT. The week of the test I ended up doubled over in pain, unable to eat and feeling horrible. My PET/CT revealed that the cancer was now in my pancreas and in almost all of my abdominal lymph nodes. I was devastated. Because of the extensive disease I was not a surgical candidate and went on Xeloda, Avastin and oxaliplatin. I had an anaphylactic reaction to the oxaliplatin and was taken off of it. I was not sure how much more I could go through. I asked my doctor for a prognosis and she said as long as I continued to respond to treatment we did not need to talk about a prognosis.
One day I was walking down our stairs and I decided I was not ready to die and that I would do whatever was necessary to live. Then a miracle happened: after 6 cycles, there was no evidence of disease on the PET/CT and my CEA was 2.2. This was in May 2006. In June 2006, my CEA had gone down to 1.3. It has taken a few weeks for me to get used to the idea that just for today I am going to live, and it is okay. In fact it is wonderful and a blessing. Like I said, just for today.